ArticleJournal of empirical research on human research ethics : JERHRE2016
Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability.
Article in Journal of empirical research on human research ethics : JERHRE, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
17 citing papers in PubMed, 3 syntheses or guidelines pooled it, 41 citations in OpenAlex.
- Barriers and Facilitators to Participation in Psychosocial Research for Adults With Intellectual Disabilities: A Systematic Review.Journal of applied research in intellectual disabilities : JARID · 2026Pooled it
- Risks and Safeguards in Social-Behavioural Research With Adults With Developmental Disabilities: A Qualitative Systematic Review.Journal of applied research in intellectual disabilities : JARID · 2025Pooled it
- Responsible inclusion: A systematic review of consent to social-behavioral research with adults with intellectual disability in the US.Disability and health journal · 2024Pooled it
- "I make my own decisions": Views on precision medicine research participation decisions from adults with intellectual disability.HGG advances · 2026Article
- "It is important to me to know where the information is going": Views of adults with intellectual disability on data sharing in precision medicine research.Genetics in medicine open · 2026Article
- Adults with Intellectual Disability and Consent to Precision Medicine Research: Using Supported Decision-Making to Facilitate First-Person Consent.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2026Article
- A Scoping Review of the Ways Gatekeepers May Hinder or Promote Opportunities for People With Intellectual and/or Developmental Disabilities to Learn About Research Participation.Journal of intellectual disability research : JIDR · 2025Article
- Enhancing stakeholder roles in autism early interventions in the United States: A stakeholder-driven research agenda.Autism : the international journal of research and practice · 2024Article
- Opening the door to university health research: recommendations for increasing accessibility for individuals with intellectual disability.International journal for equity in health · 2022Review
- Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement.Journal of applied research in intellectual disabilities : JARID · 2022Article
- A survey study of the attitudes and experiences of adults with intellectual disability regarding participation in research.Journal of intellectual disability research : JIDR · 2021Article
- Perceived protectiveness of research safeguards and influences on willingness to participate in research: A novel MTurk pilot study.Journal of psychiatric research · 2021Article
- Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations.Autism in adulthood · 2020Article
- Do human subject safeguards matter to potential participants in psychiatric genetic research?Journal of psychiatric research · 2019Article
- A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?Disability and health journal · 2018Article
- What's the Harm? Harms in Research With Adults With Intellectual Disability.American journal on intellectual and developmental disabilities · 2017Article
- Is It Worth It? Benefits in Research With Adults With Intellectual Disability.Intellectual and developmental disabilities · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public's views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.